Form Filling and ASD

I sit here today with a form to fill in. A form which has to be sent in by the end of the week, and yet, it sits blank in front of me. I always leave it until the last minute, because the questions are never easy. How can they be, when they are about the struggles your child is facing?

Since we first raised concerns about our son with the GP almost three years ago, we’ve filled in numerous forms and questionnaires. Too many to think about. Each one just like the last, but they never get easier. Forms to help with diagnosis, to access support, for disability living allowance, whenever you meet a new professional. I feel like we’ve answered the same questions 100 times over. What was your child like as a baby? What struggles does your child face on a daily basis? How do they compare to another child of a similar age?

Today I’m filling in a form which will be used to decide whether or not our education board will give Neil a statement of special educational needs. This statement will set out Neil’s needs within school, and outline what can be done to help him. We’ve been in the process of getting a statement for almost 2 years. We’ve answered these questions many times during the process, with the teacher, with the special needs coordinator, with the educational psychologist, and this time for the education board.

The thing is, since Neil was diagnosed with ASD, we’ve just been getting on with things. We know our son well, we know what triggers his anxiety, we know routines make a happier home, we know (to some degree) how to avoid major meltdowns. ASD has become such a big part of our lives that it all feels totally normal. I’ve become so used to our routine, our way of doing things, that sometimes I forget Neil even has Autism. Then you have to fill in a form, answer in depth questions about the level of care your child needs, going through all of the details of your child’s daily struggles. When you write it all down, you realise how much extra work you do each day. It suddenly makes everything feel real again. My son is different. My son does have Autism.

The forms will continue to come, we will continue to answer the questions that remind us how different things are. And answering the questions won’t get easier, but if it helps us get the support Neil needs, we’ll answer those questions forever.

13 Comments

Sending you virtual hugs, it must be difficult. I won’t pretend to even know what its like. All I know is that as a mother, anything to do with our little ones, the feeling is always double whatever it is. Double the worry, but on the one hand, the joy and the love they give us is also double.

Ah, see I do know what it’s like… But it’s difficult to convey just how much mental anguish these forms cause. They’re not ‘just’ a form, they are like a magnifying glass to your life and they bring out all the ‘what ifs’ and ‘what will happen in the future’, and they highlight the differences, especially when you’re good at forgetting them on a daily basis… So sending hugs to you, hope you have a huge cuppa and pack of biscuits at your side. I’m exactly the same as you, put it off and leave to the last minute because I actually don’t really want to do it. Got our statement (EHCP) review next week so am similar form filling stage – but in some ways it is easier once you don’t have to start right at the beginning again x

I can’t even begin to imagine how hard it must be to have to write about it over and over again, you would at least think that they would have some way of sharing information to take away some of the struggle from you guys. xx

I’m with you. I wish there was an automatic fill for these forms as I’ve filled in so many. It’s how it all brings it into perspective when you see it in black and white, it just seems like everyday life until you write it down. The last form I filled in I had to put down twice while my daughter had a meltdown for no reason, and then she had an ‘accident’ it was as if she was helping me to remember why I was doing it.

I feel for you as we are filling in similar forms for Sophia for Leaps funding ( some kind of support at nursery) and they have told us to make her sound as bad as we can to get the funding. It is hard writing it down though isn’t it ? It makes me realise she is not like others her own age even though we wouldn’t change them for the world xx

I don’t think the governing bodies think about how all of these forms affect the family in question, it isn’t just a form it’s a description of a person so how can you fit it all on there. You’re obviously dealing really well with everything incorporating it into your life and making it your normal (what really is “normal” anyway) . Try not to dwell on them too much! hope it goes ok 🙂

I hear you. My son has had a statement since preschool but we need to move to an EHCP (or whatever it is called!) – and the school are very organised and gave me the form about a year ago. I have even lost it and been given another one. If it isn’t the difficulty it is just having the time and energy to fill them in.

Hi Lauren, your post was refreshing to read as unless people have lived it they don’t really understand what it’s like having a child with ASD.

Our son turns nineteen at the end of the week and even now we still feel as you describe on your post. We don’t have as much form filling and question answering as we used to, but answering the questions never gets easy. I always have to think, almost like I’m answering a trick question.

And like you said, having a child with ASD does become a normal and it’s easy to forget just how difficult it is, but it is difficult, but for us it is also normal.

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I'm a 29 year old married mam of two originally from South Shields now a resident of Northern Ireland. Lover of writing, reading, photography, cats, coffee & sugar skulls! Harry Potter / The Walking Dead Nerd.

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